Does anyone else feel this way...

My SO has been looking at Bahama vacations that we can't afford because we both just want to run away from home.  But, even more than the money, the fact is that the reality of my post BMX body would come with us, and I'm having a hard time with that right now.  Not the loss of my breasts - never had much, painful fibrocysts, etc - but the tightness in my chest, still, the binding feeling under my arms, the (still) pain, the current infection are all making me miserable and would make such a vacation a waste.  So I too will get physical with anyone who suggests I had an easier time with a lesser cancer or need not have done the whole BMX.  I encourage anyone who can to hook up with a therapist with some understanding of BC and have a couple of sessions.  I live in a large enough city that I have a lot of services avalable.

I was diagnosed with DCIS in April of 2007 I had a lumpectomy followed by 30 txs of radiation.  I was very confused b/c all the readings I had done down played the fact that DCIS is stage O and some even said pre-cancer.  Then I would start every morning with a tx of radiation follow up with an oncologist and saw my radiologist every 6 months.  Now three years later I am scheduled to have a biopsy on the other breast b/c of suspicous calcifications.  I can't help but worry b/c the surgeon has already stated with my history it more than likely will be malignant as well.  I guess what I'm trying to find out is if it too is DCIS would it be in my best interest to have a bilaterial masectomy.  I can't see worrying about future cancers since it has only been three years since the last one.  I would appreciate anyone who would have an opinion on this.  I am scheduled for next week and of course I am starting to worry about the findings.  Thank you for your input. 

robin,

Nobody here expects you to be back to normal after 7.5 weeks!  Geez, it took me about 2 1/2 years to feel normal again.  And even now (and I suspect for the rest of my life), "normal" isn't what it used to be.  Having a mastectomy or bilateral, with or without reconstruction, changes your body forever.  And having a cancer diagnosis, even a "good" one, changes your perspective forever.  There are some women who get through their diagnosis and treatment quickly and without emotional impact but that's not the case for most of us and that should not be the expectation you put on yourself.  As for the rest of the world, I think the experience of most of us is that once the treatments are done, our friends and family think we should be "over it".  It's pretty simple - THEY DON"T GET IT.  For most of us, it's only once the treatments are done that we are finally able to process the fact that we've had cancer.  Just when everyone else thinks we should okay is when we ourselves start to realize that we're not okay.  So please don't worry about how you are feeling after 7.5 weeks. It's so normal. Given what you've gone through, it wouldn't be normal if you didn't feel this way.  

As for that crazy mix of emotions, yup, that's what DCIS does for you.  It's breast cancer but it's the "good" breast cancer.  Huh?   The truth is that I worry when I see someone who is diagnosed with DCIS who doesn't understand that in the scheme of things, DCIS is the "best" breast cancer to have (fully acknowledging that no cancer is good to have).  I understand the fear (and often, confusion) upon hearing the diagnosis; I'm not referring to those who are newly diagnosed.  But after a while, once a better understanding of DCIS kicks in, I hope that we all realize that it could have been a lot worse.  Unfortunately, I think there are too many who don't realize that.  I see that in some of the posts here and there have been studies that show that DCIS women think it's just as likely that they will die of BC as do women who are diagnosed with much later stage disease.  The facts disprove that.  Most women with DCIS (or DCIS with a microinvasion, as I have) will not have a recurrence; most (about 95% - 99%, depending on the study), will not die of breast cancer.  Women diagnosed with later stage disease unfortunately face much less favorable odds.

But, having said that, I get equally frustrated when a diagnosis of DCIS is downplayed, when the concerns of women diagnosed with DCIS are dismissed or when DCIS is flippantly called a "pre-cancer".  I think doctors who do that are irresponsible.  I think other BC patients who do that are not informed.  That's why I am grateful that we have the DCIS forum here.  Anyone who comes here and downplays a DCIS diagnosis will be kicked to the curb, as they should be.  DCIS might not be as serious as other diagnoses of breast cancer but it is a diagnosis of breast cancer.   Needing to have a mastectomy (as was my case and that of many others) drags many of us through an emotional mudpile. Needing to have radiation (as required by most who have a lumpectomy) raises lots of issues and fears.  Just the diagnosis alone ("cancer!") wreaks havoc on our emotions and our sense of security about our bodies.

That's the dilemna with DCIS.  It is the "best" breast cancer to have but it's still really crappy to have DCIS.  No wonder women with DCIS are confused and conflicted.

I am so very thankful for these discussion boards and for everyone's courage in posting. I have no friends, providers or family, as wonderful as they ALL are, that can relate to the DCIS dilemna. I have been reminded by several 'well, at least you won't lose your hair'. 'at least you don't have to do chemo', 'at least they caught it early', and by my surgeon, 'you're cured'. I know what the "30,000 ft level" viewpoint is but it doesn't make the feelings or anxiety any less in the moments when you have them. Thank you to all you absolutely wonderful, stunning women!

Was my lump cancer or not? Invasive or non?  This is where I have spent the last 4 weeks.  It's true...I feel like Alice in Wonderland falling aimlessly through the hole, grasping for anything & whatever information I can; looking for answers, anywhere!  After 2 biopsy's, 1 ultrasound, & 2 MRI's we finally had a definative answer...non-invasive high grade DCIS: Unlike most, my Oncologist is a colleague and close friend. Sharing the dx was emotional for both of us.  Although DCIS is non-life threatening, my mass is 3-5cm in size.  A lumpectomy would leave the breast severely deformed and reconstruction would not leave the best optimum result.  After a second opinion and meeting with Plastics, I decided on bi-lateral mastectomy with immeditate reconstruction (w/TE's). Recurrence for me in the opposing breast would always be a concern with my family history, I know I will always live with this fear.  I understand, this may not  work for everyone: please think heavy on this. Right now I feel strongly about my decision...ask me again AFTER my surgery and the pain meds have worn off.  This is a journey we have to walk alone...no one can choose what is right for each individual. 

Those out there who feel DCIS is not "REAL" cancer....I beg to differ...no,  it's not Stage, 1-4.  But it is CANCER.  Same fear....

Each decision is a SOLO run...an individual journey, we each travel.  As a surgical nurse, I have watched for years from a different view.  Now it's with a patients eyes I see.  There is definetely a deep respect for those who have traveled before me & left their mark.  Without a voice to comfort and a sounding board to share, I know I would feel lost at times; even with all of the medical knowledge I am privy to.  Thank you for sharing...it warms my soul.